Patient Stories

Justin's Story

Five-year-old Justin from the USA started screaming with pain one night as his feet had been hurting, but the X-rays showed nothing. Here is an extract from mum Katie’s blog as she finds out Justin has leukaemia:

January 16, 2016: the screaming started

“We said goodnight to friends and I began to clean up the kitchen. My mind was troubled. Why wasn’t Justin playing with the other kids? I had taken him to see three different doctors and had two set of X-rays done, yet he still complained that his feet hurt. I had put him to bed earlier with a dose of children’s ibuprofen.

A loud, frantic scream broke my thoughts. I froze and then another. I abandoned dirty dishes and moved quickly to Justin’s side. Jeff was already there (partner).

Justin was sitting up in bed, tears streaming, feet kicking; as if he could kick the pain away from him. I sent Jeff for an ice pack and took Justin in my arms. He was burning; I carried him with me to grab the phone. I dialled the number for our paediatrician, although I had already decided he was going to see a doctor that night.

Midnight

I did not want to wait for a sitter to come so we decided Jeff would stay home. I was all silent prayers and steady hands as I drove to Virtua Paediatric Emergency Room. I denied it, emotionally, just enough to function. But, inside I knew something was very, very wrong.

Another set of X-rays and a blood draw. The IV placement was the worst part. Or maybe carrying him to radiology. I don’t know. It was all kind of me being determined to get answers, ignoring the ‘I hate you’ and tiny punches finding their mark on my back.

3am

Justin finally dozed off. My phone had run out of battery. I needed water or coffee or something. I asked the nurse to watch him, found a Diet Coke and left my phone at the front desk charging station. Walking back to his room, I noticed the emergency room was eerily quiet and still. Then the doctor was there. It’s funny what you can think about even when receiving bad news.

She was talking, talking, talking. “Bone decalcification, white blood cell count.” She had to be eight months pregnant. “It could be rheumatic disease.” Arthritis? Like old people? “Red blood cell count.” Maybe even nine months. “We are transferring him to Children’s Hospital of Philadelphia (CHOP), waiting to secure a bed. I’m going to call an ambulance right now. Lastly, I want to warn you so that you’re not blindsided.”

Is she kidding right now, I thought? I am most definitely already blindsided. “I highly suspect that Justin has some type of leukaemia. Do you have any questions?”

Me: Okay.
Her: Do you understand everything?
Me: What is bone de-calcification? Why didn’t the other doctors tell me that? I had his feet X-rayed twice.
Her: It means that the bones in his feet look like they have been eaten by moths. I pulled up his previous set of X-rays. It wasn’t there. The damage to his bones happened since Justin’s last set of X-rays.

I tried to figure out the weeks when he was X-rayed last. It was right before Christmas. How long had he suffered? I didn’t know. I remembered, with guilt, sending him to school after he cried while putting on his shoes. But I couldn’t think because eaten by moths and leukaemia rang so loudly in my ears; and that kind of hot, acidic stuff that definitely is vomit but you can swallow, still stung my throat. And there was no time for guilt.

Me: Okay.
Her: Do you have any other questions?
Me: No.
Her: I’m really sorry. Do you need anything?
Me: I need to use the phone.

I could tell it was morning because there was a bustling that usually accompanies shift change just outside our room. I had made the difficult but necessary phone calls and now it was just a waiting game. Justin had hardly slept. His high fever had not broken. He was still in pain despite several doses of acetaminophen.

The doctor came in to assure me the ambulance was on its way, her shift was over and she wished us good luck. Luck. I don’t believe in luck. I ignored my back pain, fatigue and hunger. Jeff had arrived with an ashen face and few words.

Justin intermittently cried and lashed out in anger. I tried to pray in my mind but the only coherent thoughts I could form were, ‘help me’ and ‘please don’t let my baby die.’ I carried Justin to the bathroom. It was then we realised it wasn’t that he did not want to bear weight on his feet but that he could not. He sort of collapsed when I put him down in front of the toilet, but we caught him up and sat him instead. He wouldn’t walk again for four weeks.

11am

The ambulance arrived and I noticed the first of many looks of pity we would experience that year. The scene they walked into was certainly one of desperation. A half-naked screaming child. A tear-stained, dumpy-looking mom trying, in vain, to comfort him.

Something about being strapped down on a gurney sent Justin into a new screaming fit that lasted the entire ambulance ride. But, you know, there is protocol. There was absolutely no consoling him. Although every fibre in my body wanted to rip those straps off and hold him, I sat by, helplessly abiding the rules and the nauseatingly bumpy ride. But not the EMT woman’s chatter. That was too much.

She asked me question after question. I turned and looked her in the eye. “I’m sorry. I cannot talk to you right now.” Justin only hit me when I tried to console him so I gave up, closed my eyes and prayed. I think I will lose it if we don’t get their soon. I need this to be over. Help me. Help me. Help me. And then, after an achingly long 45 minutes, it was.

We were met by a team of nurses as Justin was transferred to a bed upon arrival to Children’s Hospital of Philadelphia. More pitiful looks from EMT and then they were gone. Justin was screaming that his feet hurt. I interrupted a nurse who was asking me too many questions: “Please give my son pain killers. They would only give him Tylenol at Virtua. He needs something stronger. He needs it now.”£

She spoke in a disapproving teacher-like tone that sounded as if I had just given the wrong answer: “He can have something after the doctor sees him.” “No! He needs something now! Do you understand me?”

The light was so bright in that room. Everything looked white to me. I felt dizzy. Justin continued to scream and hit anything he could reach. She looked at me all wide-eyed and said: “Mom, I understand but the doctor will be in very soon.”

Why is she calling me mom and why won’t she listen to me? Why is she saying she understands? SHE doesn’t understand ANYTHING! “No! NOW!” She left the room.

The doctor was there a second later. He put the stethoscope to Justin’s chest. Justin threw it off of him and hit the doctor’s arm. “He needs pain meds!” Now I was yelling. Minutes later, Justin found relief in his first dose of oxycodone. And, mercifully, he slept.

The day passed in varying gruelling layers of pain, fear, exhaustion and desperate hope. More blood draws, more screaming, more drugs to dull pain and lull to sleep.

6pm

When the doctor introduced himself as an oncologist and asked to speak with us in another room, I knew our lives were about to change. He talked and talked. Blood cells very concerning. Leukaemia. Bone marrow extraction. I didn’t cry. I just looked at his hands. His gold wedding band. I needed something to focus on. A long needle would pierce Justin’s hip bone and take out a tiny piece of bone as well as his marrow. This would give definitive results. This would happen first thing the next morning.

I spent the night in Justin’s hospitable bed by his side. His fever had risen to a frightening 104 degrees and drops of blood stained the blanket. His nose was bleeding. I tried to make him as comfortable as possible. I demanded pain meds. I sang softly in his ear: Jesus loves me, this I know.

8am – January 17, 2016 – one year ago today

I stayed in the bed as they wheeled him to surgery. I stayed while they administered anaesthesia. I stayed until he was asleep. We were escorted to a nearby room to wait. I hadn’t slept in thirty-six hours. My mom had brought a change of clothes but I hadn’t bothered with that yet. My dad arrived with cheese steaks and I managed a few bites.

We were told the procedure went well. Justin was awake. We went back to his room. His pain under control, Justin’s manner turned to despondence. All he wanted to do was play a game on Jeff’s phone and we let him. All day.

7pm

We were led to another conference room. I excused myself from details I’d never remember anyway and walked out. I found a corner by myself and cried and cried and cried. Then I wiped my face and stood up, resolute with an insane amount of God-given courage, and walked back to my crucible. This was the night I’d begin to experience the deepest kind of anguish paired with the sweetest kind of Divine nearness.

I thought about what a friend had said to me earlier that day in the lobby: “You need to blog this.” I took a deep breath and began. Acute lymphoblastic leukaemia (ALL). I have no other words. January 17, 2016. One year ago today.

Chemotherapy until March 2019

I have blogged our journey ever since that day. Justin went into remission 37 days into treatment but will continue chemotherapy until March 2019, which is the full three-year protocol for ALL.

He still experiences fatigue, nausea and stomach pain. Justin is in physical therapy for CIPN – chemotherapy-induced peripheral neuropathy. This affects his legs and feet, causing pain, weakness and heel cord tightening. We are currently in the process of having ‘boots’ made which will be worn at night to properly stretch his legs, assisting with toe walking and weakness.

Justin is home-schooled because of the many days he would otherwise miss because of clinic and therapy visits as well as not feeling up to the rigours of full-time school.

We have a good support system of family and friends, which, I believe, in this kind of situation, is absolutely necessary. And we lean heavily on our faith in God when moments are sad, difficult and painful. I also believe in maintaining a sense of humour and making clinic and therapy fun (as much as possible) for Justin.

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